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Friday, January 30, 2015

Below is a link to an article I wrote for an alternative weekly paper published in our city. I worked on it for less than a week, which was breakneck speed considering how information changed with each meeting and interview I attended to gather information. Drafts of the article changed daily, with the focus and direction moving as the story evolved.

Through the process, my brain and heart evolved as well. I moved from, "What's the big deal to walk a few extra steps?" to "I think I might get it now." For a week, my brain was cluttered, trying to sort through the information and make sense of all of it.

Tuesday, January 27, 2015

"Special Olympics' Unified Relay Across America is a historic event with three simultaneous torch runs, held from East Coast to West Coast, to kickoff the Special Olympic's World Games in July/August 2015 in Los Angeles, CA.

Unified Relay Across America will begin May 26th and end on July 10th, 2015. The three legs will be:

The Northern Route (in red): Augusta, Maine to Los Angeles, CA

The Cetral Route (in white): Washington, DC to Los Angeles, CA

The Southern Route (in blue): Miami, FL to Los Angeles, CA

Unified Relay is a team based event. Teams of 1 to 15 people will have the opportunity to walk, jog, run, or roll (rollerblade, skateboard, wheelchair) a 1/2 mile segment or cycle a 5 mile segment. Your team will be carrying the Flame of Hope, brought all the way to the United States from Athens, Greece. The Flame of Hope is a beacon to unite communities in acceptance."

Wednesday, January 14, 2015

As I sat with Ben in his bedroom the other night, my mind wandered.
I recently cleaned up the shelves in our library and all the baby books were taken down and dusted. Each son has their own photo album, baby book and keepsake box. I thought about Ben's books and how being the first child, every single moment was honored with a snapshot.

My meandering mind went to the dark place I keep hidden in the deepest recesses of my mind. Ryan and I will not be around for Ben one day. It saddens and scares me. I know he has Logan and Sean, but it will be different. As parents, we have a level of love and understanding of Ben that no one can come close to emulating. With us gone, Ben would be in the care of other people - strangers - people we do not know, people we have not vetted.
My one solace was knowing how Ben's albums would show these strangers that he came from a loving family who cared about him. They would see a sweet boy smiling, surrounded by family and friends. I rationalized that this would influence their care and love for the adult Ben. Then I pushed these dark thoughts back into place, knowing I have to keep them away. The best use of my energy, emotions and time is on the present, building a strong foundation for Ben so when change comes, there will be something good in place for him.

The very next day while waiting on line in Walmart, an older woman was ahead of me waiting to purchase an umbrella. She had special needs. Another woman ahead of her in line, commented on the umbrella being a very pretty color. The kindness in the comment, as well as the delivery, made me pay attention. As I continued to observe these two women interact, I realized that they were together, most likely it was a direct service provider with her client.

All the emotion from the other night flooded back and my eyes started to water. Instead of the woman in the puffy pink jacket, I imagined Ben in forty years, happy, out and about with someone who cares and respects him, not the so-called stranger I had in mind.

Needing to mark this moment, I spoke to the caregiver. With teary eyes and emotions flying around me, I am not sure what I said, but she understood me. I am sure I thanked her for her commitment and dedication to her chosen profession and specifically for the tenderness she displayed to her client.
Worry about Ben's very far away future (I don't plan on going anytime soon) will never go away. It will gnaw at me, rare its ugly head and even bring me down once in awhile, but my job is to keep snapping those photos of a happy person, living his life with love and friendship.

Monday, January 12, 2015

After 10 years of being in the world of special needs, we have pretty much heard it all - what we can do for Ben, what we should buy and try and how we should do certain things. For the most part, we have done everything suggested, including, but definitely not exhaustive - chewy tubes, electric impulse machines, ABA therapy, special utensils, foam seats, kinesio tape, weighted vests, vibrating pillows, exercise balls, whistles, vibrating pens and even cloth napkins.

When Ben starts with a new therapist, they make suggestions based on their experience and observations. More than likely, we have tried the technique or equipment at an earlier time in Ben's life. It has either worked and we still do it, worked but not anymore, worked but not worth the hassle, worked but we got lazy or not worked at all.

A few weeks ago, the vibrating toothbrush idea was brought up to me again. I would be lying if I did not share that I do get tired of these ideas. My responses have run the gamut: "Yup, we've done that.", "Got those in the closet.", "Ben hated that.", "Ben ate it.", "Nope, just not doing it." I am careful not to roll my eyes, at least in anyone's line of sight.

Ben received a vibrating toothbrush in his Christmas stocking from Grandma. (She is a past special education teacher and ABA therapist, a proponent of the vibrating toothbrush, and very sneaky.) Ben had one several years ago and ruined it quickly by biting so hard on the brush that he stopped the vibrating. Needless to say, he seemed to hate it, and we stopped using that type of toothbrush.

Since we had this new toothbrush, we tried it. At 11 years old, Ben loves the vibrating toothbrush. So much, in fact, that we asked Grandpa, on the other side, to get him a few more.

Lesson learned - been there, done that - has expanded to - been there, done that, let's try it again!

Saturday, January 10, 2015

Rejected is a negative word, usually associated with bad feelings. You have been turned away, turned down, turned around. In December, I received a rejection. My response was nothing short of elation.

I took my first leap and sent a query letter to a national magazine, requesting an opportunity to write an article on a specific subject. It was something I wanted to do for a long while, but was unsure of the process.

After researching and reading several articles and blog posts on this subject, I found out that there are many ways to submit articles, but national magazines expect to receive a query letter with very specific guidelines followed. They either accept or, in my case, reject the query.

For me this rejection meant I had attempted something I have thought about many times. According to my research, another umpteen queries may lead to an offer. This rejection will be the first of many, but only if I keep trying.

And my feeling of triumph was only underscored by the rejection letter itself...it had a glaring typo.

Wednesday, January 7, 2015

Happy New Year! We had a quiet and relaxing holiday break. Chinese food for Christmas dinner, several pajama days and a few visits to local parks made for much needed family time. Alas, reality has set in - school is back in session, cold weather has hit and we are back into the swing of our regularly scheduled program.

Ben wears ankle foot orthotics (AFO's) to help him walk. They give his lower leg and ankle support and help keep his foot in the proper place. His feet tend to pronate - turn in so he is walking on his arch. Without these orthotics, he would not be able to walk as much as he does in his walker at school and with assistance at home.

AFOs also have their downfall - they are big, bulky, difficult to get on and very expensive (about $1000-2000 a pair). It is recommended to recast every six months for new orthotics, especially if your child's foot is growing. Although Ben's shoes are rough looking after six months, the AFO's themselves are in fairly good shape. They are made of hard plastic and since he does not run or play in the mud, they are clean and re-usable. It seems a waste to throw them out.

Ideally, the orthotic needs to be made for a specific person. In the United States, it is illegal to reuse orthotics. In places like third world countries where access to healthcare and resources for orthotics may be unavailable, it is possible to reuse them.

There are organizations that will collect the used orthotics from individuals or from orthotic companies and send them to those in need. Here is a group of organizations working together to donate used braces: